28 September 2014

I currently feel overwhelmed with stuff I have to do. The day job is busy, I'm performing at the Melbourne Fringe Festival this Friday and Saturday, I've got some nights out at the movies and theatre this week, I need to exercise and keep house, and there is a backlog of draft blog posts (and articles) I have to finish. Yesterday I had a three hour nap in the day, and I still went to sleep by 10.00 pm. Life's good, but it's busy.

So this week I can't promise to have anything up on the blog. I've been trying to write two to three posts a week, but by the time I finish at my day job - which is a communication role - my brain is done with the thinky and I just want to zone out.

I'm stealing a few minutes to write this as I feel guilty for the basket of washing that hasn't been folded yet, and wondering how long I can go to the gym for before Fringe Festival rehearsals this afternoon. And then I think, stuff it, I just want to write a few words. While listening to a podcast of course. And the dishwasher is on. I've taken an hour this morning to send off $3500 worth of invoices while eating breakfast. I'm the queen of multitasking.

"A tricky thing to avoid as a full-time blogger, considering that the Internet never sleeps, readers want fresh content daily and new social media platforms must be mastered and added to the already demanding workload. Add to that the economic challenges of blogging full time. "

Sometimes I feel this way. Each blog post is more than the writing. There's research, back linking, proofing, social media promotion and something I'm really bad at - replying to the lovely comments.

I feel the pressure to create new and interesting (and good quality) content on a regular basis. I want each blog post to move a reader. I want to write well enough to be republished. I place ridiculous pressure on myself. Of course, the world won't stop if I don't blog, but bloggers are being encouraged to write regularly and consistently so readers know when to expect a new post. I could just get over myself and realise that people aren't relying on my blog, and reassure myself that I will pick up writing again next week - it's my passion, how could I leave it for too long?

I also get this unnecessary worry that the more I write about appearance diversity, the more people will be bored by my incessant activism, or think I'm overreacting. I get messages telling me that I should see each encounter of having my appearance questioned as an opportunity to educate, or that I'm being defensive or that these encounters are not an intrusion but a part of life that I should expect. The truth is, I'd rather educate on my own terms - here - rather than having my day interrupted to satisfy a stranger's curiousity. And that's ok. And I know putting myself out there for comment through this blog is my choice, but I really don't want to be made to feel I'm overreacting or imagining things when I write about them.

Blogging is hard work - it takes time and work to build a community of followers, and while there are infinite topics to write about, my time is finite. I'm tired. So this week I'm going to take a break from the blog. I just don't have the energy to write. You can catch me on Facebook, and Instagram to see what's going on in my life.

24 September 2014

After many, many months of not going to the gym because of not having a car, traveling the world and a long time being sore, I'm taking it up again today.

I feel like a heffalump and need to get my bridal body. I don't weigh myself but my clothes feel uncomfortable on me, and I know it's time. When I was exercising regularly last year and earlier this year I felt the best I'd ever felt.

I've been yearning for the endorphins, for the small achievements of running through a song - and then another one, and before I know it I've done two kilometres. I've wanted glowing skin again. And a flatter tummy. I want to feel good.

And so I go, after work this afternoon. Wish me luck. Here's to social media keeping me accountable! As friends also on the fitness kick tell me, we are in this together.

22 September 2014

This isn't a piece to examine or to criticise the intent, it's writing out my feelings. It's exploring why I feel this way. I've sought permission from Adam to run this post. It also contains a little nudity.

I don't believe women's bodies should be objectified, and I don't believe men's should be either. I stopped buying women's magazines years ago because there was too much direction of the reader to be something they're not. Get thinner, wear this, make sure you're having sex five times a week to keep your boyfriend, you won't get a boyfriend looking like that, don't eat this, aspire to be like that celebrity. I just wasn't that person women's mags were targeting.

And so I was surprised when I got home to see Zoo Magazine sitting on the coffee table. A bright yellow cover featuring a young woman in a skimpy bikini and maybe a truck and some shouty headlines. I don't know, I didn't look that hard.

"Why is Zoo Magazinehere?" I asked.

"I'm going to read it", he said. If I had proper eyebrows, I would have raised them.

"But not for that stuff", he added.

You mean you can read those mags?, I wondered.

I stormed off to the kitchen, giving him the silent treatment while I went to make a potato bake. With cheese and bacon. Clearly to ensure I will never feature on the cover or inside the magazine.

I thought about why I'm angry that there was a Zoo Magazine sitting on our table. Sure he's a man and can watch or read porn if he chooses - perhaps on his own electronic device, away from my eyes. And so can I. But it's confronting to see it sitting on my table among magazines filled with food and journalism and wedding ideas. It's literary snobbery I know. And it felt like an invasion of my space - even though we live together now. But this is mostly about my appearance activism work. And also, my own appearance. I can't be strong all the time.

I want people of all appearances to feel good about themselves, and I want there to be more diversity in the media. These types of magazines aren't representative of diversity.

Zoo Magazine and others goes against everything I believe in. It contains near naked women, airbrushed, posing and portraying a sense of ideal perfection.

Didn't he want to look at me anymore? Why did he need women in a magazine like that?

He's looking at women that I'll never be - taut stomachs, smooth tanned skins, long hair, bikini clad bodies and cosmetically enhanced faces. For a minute I was reminded of that - I didn't feel normal enough. I didn't feel good enough.

And I wondered if my activism work has been enough.

Paper ladies can hurt.

I realise that I'd come across as controlling and slightly overreactive, and perhaps held misinformed prejudice because I really did judge a book (using that term loosely) by its cover, but I wasn't expecting the feeling I'd have when I saw that magazine in my house, bought by my fiancé. Adam and I talked about the Zoo Magazine later that night. His intent was not to disrespect me or other women.

Part two

Fast forward about a month later and I was invited to see Exposed at the Girls on Film Festival. Exposed is a documentary about eight burlesque performers. It's a story of appearance diversity, self acceptance and celebrating difference. It was so good!

I took Adam along, and a few other friends were there - including the director and the publicist of the festival who warned us there was LOTS of nudity and body parts at different angles. I joked to Adam and those around us that this is our first nude film, and I hoped that the winner of the ticket giveaway on my Facebook page would enjoy the film and not hold bad feelings towards me if she was scarred by the content (she loved it! Phew!).

The film contained so much nudity and swinging around of breasts and penises. It was certainly eye opening. However, the burlesque performers in Exposed were not on stage for the male gaze, rather for the universal gaze. They'd created characters that they feel comfortable with, exploring issues wider than just a naked body on stage.

Mat Fraser - an English performer who has a show called The Arms (because of his short arms due to the effects of thalidomide) - spoke about how he is able to push out a political statement by being funny and pushing boundaries of conformity. For years he didn't feel in - until he became a disability activist and then a performer. He said "I became normal by highlighting my difference". And you know, I feel this way too. I feel a part of some incredible communities (the blogging community and the disability community) because of the way I've told my story and highlighted my difference on my own terms.

The World Famous *BOB* (above) - a female drag queen who, for years, identified as a gay male, also spoke about being proud and highlighting difference. She said that women ask her how to conceal cellulite. "How do you hide cellulite? Cover it in glitter and shine a fucking spotlight on it", she said. I love this!

I realised that I was so much more comfortable watching these bodies and sexuality with Adam because the subjects in the film are in control of their appearance. They're proud and empowered and showcase their self professed imperfections - which I call diverse beauty. It was easier to watch than reading the lads magazine due to the diversity within.

Even though more graphic to watch than the content of Zoo Magazine. these people had a purpose of showing off their bodies proudly - even though they didn't fit the mould of perfection. Exposed showed representations of diverse bodies - non normative and non conforming. There was no airbrushing. The performers were in their natural state - laughing, educating and being vulnerable.

While watching Exposed, I was furiously taking notes, thinking back to the day I found the Zoo Magazine. This isn't about who's more of a real woman or degrading their employment choices. The women on those pages must be every bit of in control of their appearance as the burlesque performers. Yet for me, there was something much more powerful seeing the performers in Exposed really owning and loving their image, bringing their identities to life in a three dimensional way, and giving people who don't fit the perceived beauty ideal permission to do the same. I felt connected to these performers, knowing that I'd have a place on 'Misfit Island' (as Exposed performer, Tigger called it) if I wanted, too. I could never be in Zoo Magazine.

* I promised Adam that I owe him a movie of his choice after watching Exposed. His choice. I will sit through anything!

18 September 2014

I pinch myself at the opportunities I've had these past few years. It is amazing to be asked to speak or write about what it's like to look difference - to such diverse audiences. On Friday I'm talking on a panel at The SCAR Project in Sydney.

The SCAR Project is a series of large scale portraits of young women with breast cancer. The images are unflinching, revealing the raw and honest face of breast cancer. They ask the viewer to reconsider beauty, permanence and the simple but immense power of our daily interactions. Ultimately, The SCAR Project is not about breast cancer, but the human condition itself; the images transcending the disease, illuminating the scars that unite us all."

Here are the details of the session I will be at:

What is Beauty? 19 September, 12.30pm - 2.00pm

Hosted by Eliza O’Hare, Associate Editor at Harper’s BAZAAR and brought to you by Estée Lauder

Exploring different definitions and challenging traditional views of beauty. The discussion will examine how society defines beauty, how beauty is portrayed in the media and the impact this has on society.

RSVP at beauty@nbcf.org.au

Numbers are limited and the session is FREE to attend, with refreshments and food provided.

NOTE: The SCAR Project exhibition is suitable for ages 16 years old and above, at the discretion of parents and guardians

Come along!

I've been thinking a lot about acquired visible difference lately, and the adjustment and grief over losing an appearance one becomes used to. The panellists and I have been asked to talk about our definition of beauty. Here are my thoughts on beauty - you may have read some of this prior, but I wanted to collate some of my thoughts in one small piece:

When I think of beauty, I think of outer appearances and also the mind and heart. Good writing, intelligent thoughts and creativity are as beautiful as a Cupid's bow lip and silky hair. Above all, it's a kind heart that is most beautiful. People get more beautiful the

People don't automatically see the beauty in difference. They stare out of curiosity or confusion or ignorance or disgust. People don't aspire to stand out by their difference - they want to be like the women dancing on MTV or on the covers of magazines. And many young men expect the women they date will look like supermodels. Little girls want to dress and look like Elsa from Frozen - blonde hair and porcelain skin, and a flowing dress. They don't want to look less than a Disney beauty ideal. I wonder if there were more diverse role models in children's cartoons and books, would they be less taken aback by difference, and and more inspired to embrace individuality.

I would like there to be a greater representation of diversity in the media, so we can normalise difference - so that we can see there's beauty in everyone. Body image and diversity is so much more than fat and thin, and it's so good that powerful women in the media like Turia Pitt, Francesca Martinez and Stella Young are bringing diversity into the mainstream. I also think blogging is at the forefront of diversity in the media- showcasing all types of people - their image and stories - and I'm so glad to be a part of this. I'd like girls to know that it is ok to be interested in fashion and taking pride in their appearance even though they have a facial difference or disability. I'd like wider society to see beauty in those who look different.

Lots of people stare at me and ask questions and ridicule. But so many more - the people who matter - see ME.

My love, he's got this joke with me. It's a play on everyone who intrusively asks me about my face.

"What's on your face?", he says.

Then he adds, "Oh it's just beautiful."

And boy do I smile when he says that. I am the luckiest.

I don't need anyone but myself to make me feel happy with my appearance. But it is amazing knowing and seeing how someone else sees me. It's such a joy to love and to be loved. And I love how it shows. This isn't vanity. It's seeing myself as my love sees me. When I see a photo he's taken, I see the beauty he sees in me.

How do you define beauty? Has the definition changed through your life?

15 September 2014

This post has been in my drafts for more than a year. I am glad to relive these conversations and finally post this. This is a lengthy post about 'sliding doors moments' - you know, the times when you are at a fork in the road and could have chosen left but you went right? How would your life have turned out differently?

It was June 2013 when the Hottest 100 of all time was on Triple J, and friends on Twitter were saying that Twitter makes this countdown more fun. We talked about where we were when songs were released, and how they changed our lives.

I got talking about how I was never into Jeff Buckley because I hadn't heard him, and that I felt like the mid-late 90s was a Savage Garden bubble of fandom for me. It really meant that I wasn't exposed to anything outside of the top 40 on the radio or TV as I would be too busy listening out for Truly Madly Deeply at number 1 (even though I had more than one copy of their CD!). I missed Jeff Buckley. And I know my friends were shocked. I realised that my life might have been different had I discovered Jeff Buckley instead of Savage Garden. Of course I was laughed at for my music choice. It was my musical sliding doors moment.

Silverchair's music contributed to another sliding doors moment - perhaps my biggest decision in my life. I mentioned this at a speech last week, and my current day job manager said he sat there with his head in his hands, shaking his head at my honesty! When I was in my last year of university, I applied for 26 graduate position jobs, all around the East Coast of Australia. I was to move from my small hometown near Albury to a big city of opportunity.

In December of that year, I was offered two jobs - one in Canberra and one in Melbourne. I weighed up my options in a very short timeframe. The Canberra job paid more money at the time, but the living expenses were more expensive and the public transport was limited. Melbourne's job paid slightly less but the public transport was more accessible. There was also the Melbourne lifestyle that appealed to me. I had a few friends there at the time. I knew it well from regular trips to hospital yet I'd only been to Canberra once or twice then.

And the there was this deciding factor. In late 2002 I'd booked tickets to see Silverchair in Melbourne the following April. I worried that if I took the Canberra job, I wouldn't be able to get time off for the concert in Melbourne as I would be new in the role. And so my choice was made. I chose the Melbourne job because of that Silverchair concert. I did get to see them in 2003, it was at the Palais and it was amazing! That was the Across the Night concert, which was a mix of slower Silverchair and the rock they're known for. I also remember a couple of women with massive hair sitting in front of us, obscuring our view. When I was asked by the former head of my organisation why I chose this workplace, I told him the truth, and I think he was very surprised.

I wonder how my life could have been had I moved to Canberra? I wonder. I am so grateful for the life I've built here in Melbourne. Could it have been the same way there?

I think back to my parents - they had to leave South Africa to marry due to Apartheid, and Dad applied to work in Canada and Australia. He said to my Mum, "we're going to Australia to get married." And so they did. What would a Canadian life be like?

After I briefly shared my sliding doors moments on Twitter, I asked my Facebook friends what theirs were. And they shared them for me to blog. I love these. They're truly life changing, life saving. Thank you everyone.

Kathryn: "When I left government style job at legal aid, and went into private practice !!!"

Rebecca: There are many! I was accepted into teaching at Charles Sturt in Wagga but decided to stay in Illawarra for a boyfriend who turned out to be a violent, possessive and crazy so I wonder what would have happened if I'd made the move and become a teacher. Who knows where I'd be now! Also wish I'd travelled more when I was younger. Have to say my path lead me to have my amazing son so he's worth all the bullshit along the way!

Mia: "Everyone has one ... Transfer with my job to New York and work on Wall St. or Work for my Dad ... I chose my Dad, my family. I still choose community over profit."

Jess: "If I had chosen a different path in life, I would not be alive.

At thirteen years old I became life threateningly ill with a chronic illness.

A few years later, I developed Anorexia Nervosa. When the body breaks, so often the mind follows.

I could have continued on the path of self destruction, and starved myself into oblivion. I could have remained angry at what had happened to me, and I could have continued to punish myself for something which I never had a choice in.

I never had a choice in developing a chronic illness, and I never had a choice in developing an Eating Disorder. But I did have a choice in recovering from my Eating Disorder.

I remain Chronically Ill, but I am free of my anorexia.

I am alive.

If I had taken the alternative path, I would not have been here to answer this post.

every single day I am reminded of why the path I chose was the right one xx"

Belinda: "At age 19 I had dreams about moving overseas and working somewhere exciting for a few years. Met a guy while still in Sydney, stayed with him far too long (he was also abusive) and that dream never happened. I wonder what would have happened if i never met that guy...."

Cindy: "selling my hairdressing business and leaving my career to become a disability support worker. I often wonder how much richer I would be or if i'd just be miserable. I love my job now but doesn't pay well. Also if I didn't buy my house, I lost a lot of freedom for it, but gained stability. Lose win or win lose? I was a hairdresser for 14 years before I decided to give it away.. I loved that I made people feel great, but it just wasn't giving me the personal reward I was looking for. I have that now, and I do all my clients hair for them for free. The joy on their faces is irreplaceable.. I have the best of both worlds right now, just poorer! LOL!"

Robert: "The most significant (from which all of my other sliding doors moments in the last decade have derived), was moving to London (although I didn't really fret about that choice at all - there was no alternative in my mind at the time). There was an interesting one when I first arrived in the UK, and was living with some Irish Travellers (gypsies) in Bristol - was with them for 5 days before deciding that London was where I really needed (wanted too, but needed more) to be."

Bianca: "I often wonder what my life might look like had I not met my fiancé five years ago. Before meeting him I had absolutely no direction and a very low opinion of myself. Since meeting him, my life has completely changed. He encouraged me to go back to school and I am currently completing my Masters in Teaching. I'm very thankful that I said yes to that date!"

Michelle: "I wonder what would have happened, had I applied myself to uni the first time around. I would have graduated in 1998, and probably wouldn't have spent 20 years in retail."

Sharnee: "When I was 15 I didn't move to QLD with my boyfriend. (we fell in love at 13). We spoke for months, him singing to me and pleading for me to move up. I wanted to be with him, but I wanted to finish year 10 & 12 and go to uni with the support of my family. We had to let each other go- and move on with our lives. Over a year later (at just 17) I fell pregnant to a new boyfriend. And we created a beautiful family. What would my life had looked like if I had chose to move to QLD... Hmmm I know I would've tried to finish school, but it would've been hard being so young, no licence, no parents, I would've hoped to have gone to uni... But I could've failed to do both...in my dreams I see me playing pro golf with Brett - and him being my caddy."

Rachael: "For me, my friend and I changed the date of our cruise ship holiday and on the holiday we went on I met my now husband! Had we gone on the original dates we had planned, I have no idea where I'd be now.... Funnily enough I wasn't thrilled about changing the dates at the time but now I'm so glad we did because I'm happy with what turned out to be!"

Jean: "When I decided to move interstate to study my dream course, leaving behind close friends, family and bf. Maybe I should've just settled for second best, different career path but possibly more stable and stayed with those I loved."

Lynn: "Choice of two jobs 18 months ago - chose the wrong one I think x"

Khairani: "When Carly asked what my "Sliding Doors" moment was, apart from the fact that chopping off my hair did not lead to my death-slash-the-birth-of-a-child (Late Spoiler Alert!), I would have to say that each and every moment in life could be a sliding door-portal-thingy to another universe entirely. If I brush a mosquito away with my left hand instead of my right, will a snowstorm happen in Ottawa? If you decided to click on a cat video instead of this link, would a chain of events have unfurled that sends you to Mount Kilimanjaro in the next four months? Could we teleport cheaply sooner if we eat more carbs?

This morning, my father excitedly sent the family a link to an article about a "time cloak" invented, that could literally hide data. It made me wonder if the scientists had ever read "A Wrinkle In Time" by Madeleine L’Engle, and if they hadn’t, would their emotional makeup over long nights of researching be different? Would they have had the same children and bought the same car or soy milk brand? Do subatomic ripples effect the whole of life? Yes, yes, and we’ll never know. All to say, vagueness is the stuff the universe is made of. God, or as my friend said last night, "Whatever passes for God" in your universe, is playing it coy, and this means, delightfully, that the human soul is set up to imagine difference and possibility. New haircuts. Bad choices. Sweet music. Empathy. Goodness. Grief. Cheese concoctions.

And take a breath with it now, where you are. Close your eyes. Touch your eyebrows. Now I’m just messing with you… But truly stay in this moment. Choice and fate have quarreled to lead you here, and you are safe, or will be. There is grace here. The seconds run large."

Tenniell: "For me, definitely the way i met my future husband & father to my 4 children ...we met at the skankiest pub in Geelong (my first & only time there) after deciding to go out with my uni mates on less than $20 .. I accidently bumped into him on my way to the toilets & he was just getting to the upstairs landing .. I said "sorry mate" & he replied "you're quiet welcome, don't do it again!" .. throughout that night we kept bumping into eachother in the packed nightclub .. at bar, walking through crowds, etc!! Here's the kicker ... the next fortnight, without any forward plans or interaction, we met again in a different pub, this time I bumped into him as I was leaving the girl's toilets & he was waiting in the que for the men's!! We got chatting, I was on my way back home, he said wait up, ended up doing his wee outside the pub ... I met his best mate that night (who will become our kids godfather!!) ... 13 years later and we're still bestmates!!!"

Cheryl: "About a week after my wedding, I started to have dreams where I said to my Dad just before he walked me down the aisle, "Stop the wedding!" How sad. I'm not sure what I would have done if I hadn't gotten married; I had no other plans. In 1969 you went to college and got married at 20. I did what I was expected to do."

1. Agreeing with my boyfriend at the time that I shouldn't try to become a model.

2. Deciding to date the man who is now my husband, even though I'd only been single for 2 weeks after 4 years with the guy from 1.

What would alternate me have looked like? Maybe a model. Maybe a failed model. Maybe with someone else, maybe with the Viking anyway. Who knows..."

Alysha: "Choosing to leave my abusive partner when my son was 6 months old. I'm not sure that I'd still be a functioning human being if I'd stayed. And my beautiful boy certainly would have been a different person if raised in that environment."

Tash: "Looking back, I feel like I have a few moments and decisions in life that could have gone either way, and changed everything if I’d followed the other path. I think the one that stands out the most to me, maybe because I am now middle-aged and single, is choosing my uni dreams over a boy.

I had always dreamed of going to university, in Melbourne, and leaving my home town. This was connected to what I thought I wanted to be when I grew up at the time, and this did not match with what was on offer in my home town university. Although, to be fair, I never actually considered staying in my country town. I had built a whole idea of what life would look like, living and studying in Melbourne, and that dream took hold hard.

But towards the end of Year 12 I met a boy at my part time job, who I still think could have been someone significant in my life. I wonder if I had not had my sights so firmly set on moving to the big city and going to university, whether something significant would have happened with him. Maybe I would have started uni in Melbourne still, but had a reason to return home more often, or transfer to the local university….. Maybe things would have worked out, and I could now be settled down like my peers from high school, with at least two children, and a house in one of the new estates.

But I didn’t let this potential relationship change my path, and this boy and I grew apart, and then lost contact. I met new people, new boy crushes, and followed a much wider study path than I even imagined back at school. So instead of a home selected off a developer’s plans, I am well travelled, well educated, and feel confident that I can work anywhere I want to work, anywhere in the world. But chronically single!

Sometimes I do wonder what happened to that boy, and how very different life would be now if I had followed that other potential path."

-

I love love LOVE these! Thank you to all of my friends for sharing these personal, intimate and interesting journeys.

12 September 2014

I've admired Hunter Steinitz for a long time. She's a fantastic role model for young people with Ichthyosis. I'd love to meet her one day. In recent months, I've come to know her Dad, Mark. I love their close relationship, it reminds me of my Dad and I. I asked Mark to tell his and Hunter's story, and I'm so happy he and Hunter agreed.

Meet Mark and Hunter.

"My name is Mark Steinitz. I have a 19 year old daughter named Hunter who is beginning her sophomore year at Westminster College. Like other college students, she isn’t quite sure what her life’s work will be, but has begun her studies as a double major in religion and theater. Not necessarily unusual on its face, however Hunter has Harlequin Ichthyosis, which makes it somewhat unlikely.

As a carefree 39 year old guy, I was thrilled to learn that I was going to be a dad. Patti and I chose to marry and live the family life that we were both familiar with. We could not have known that we were both carriers of a recessive gene. Our combined genetics brought Hunter into this world in the 35th week of pregnancy with a rare skin disorder. Within hours of her birth Patti and I had to consider a do not resuscitate order and quickly arrange for a baptism in the neonatal intensive care unit that we casually toured just weeks before. This wasn’t what I signed up for.

While the folks at Magee-Womens Hospital here in Pittsburgh, Pennsylvania took care of Hunter, at home, Patti and I held each other. I remember sitting on the living room floor with our 10 year old daughter Dana. Comforting each other, we committed to do whatever we need to do to move forward. "One day at a time" became our determined creed.

Hunter beat the odds in those very uncertain early days. The initial milestone on this journey we found ourselves on was the lifting of the order to not resuscitate. After a stay at Transitional Infant Care Center, where we learned how to take care of her, she came home. Unlike today, information about what came next moved at a snail’s pace. Our dermatologist learned of a support group, and Patti went to work. That group, FIRST, the Foundation for Ichthyosis and Related Skin Types became our lifeline. Six months later, leaving Hunter at home, we attended a FIRST Family Conference in San Diego, California.

Families from FIRST provided some best practices to follow. Turning every stare or comment into an opportunity to educate, Patti was determined that Hunter’s education would be a mainstream one from pre-school forward. There were many challenges along the way. The tools we came to know and use, IEP’s, the 504 (editor's note: disability action plans at American schools), up front discussions with teachers and administrators all enabled us to meet each new issue. Every experience along the way put Patti in the position to help other families as we had been helped. Unselfishly she grasped every opportunity. With graduation from high school within sight, good fortune turned on us and we lost Patti to pancreatic cancer in 2011.

Our advice to each other, never give up. It’s not what you are dealt, but how you deal with what you’ve been dealt. Our recovery is ongoing. I’m extremely proud of how Hunter navigated the remainder of her high school days in spite of our loss. She was awarded The Amelia Earhart Scholarship presented by the Zonta Club of Pittsburgh.

"The most difficult thing is the decision to act. The rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward."

- Amelia Earhart.

Hunter has become the voice her mother no longer has. She most recently appeared as a guest on the Katie Couric Show to inspire others, promote FIRST and Westminster College.

We attended the FIRST Family Conference in Indianapolis to once again give back, and upon learning of a family with a newly adopted child with Harlequin Ichthyosis it was her mission to visit them and share her wisdom. I can’t wait to see what comes next."

10 September 2014

It is an interesting (not necessarily comfortable) place to be in - the subject of discussion and speculation. Things like this happen quite regularly, still they never cease to amaze me:

While waiting in a queue at a cafe near work yesterday morning, I heard the baristas say things like "she uses cream because her body produces too much skin", and "we're so excited she's getting married...no, he has normal skin". Of course it caught my attention. I find the language people use interesting. Normal skin.

The baristas were talking to a customer who was so curious about my appearance they asked the baristas about me (when they could have either asked me myself or kept their curiosity to themself). I go to this cafe a lot, and the girls who work there are wonderful - always happy and interested in my wedding plans and they play awesome 90s music.

When I got to the front of the queue, I asked the baristas whether they were talking about me, and they said yes. That customer had the audacity to ask them about me. "Why is her face like that?", they asked. I was especially taken aback about the assumption that I'd be marrying someone else who looks different.

They handled the customer very well. And they also told me they are often asked about me. Who does that?! But we all agreed that what a stranger looks like is none of anyone's damn business. It's certainly not for cafe staff to explain their customer's appearance.

And then we had a laugh. People are intrusive. It is rude to ask someone directly about their appearance. And it's rude to ask someone else about it too. There's an assumption we can't talk for ourselves, or that it'd be more polite not to ask us. I prepared a talk for a conference I am speaking at today, and one of the points I made is let the person with the disability/facial difference lead the conversation. Don't you raise it first.

I ask you to watch a video. I want to show you that what happens to me is not uncommon. Sometimes when I talk about situations like I've mentioned, people try to justify intrusive behaviour. I'm tired of that. This intrusion is real. Unfortunately it's common for those who look different.

"I wanted to stop telling people what happened to me," he says in the video. "I wanted to show people what happened to me."

Just watch this short film by Jonathan Novick.

Before you go to ask someone about their appearance/disability, it's important to consider how many times that person has been asked before. Because it's very tiring. Just because you are curious, it doesn't mean the curiosity needs to be satisfied with an explanation.

08 September 2014

A little while ago, I asked you what questions you'd like answered. I got some questions on my blog, Instagram and Facebook. Peter, a friend I met on online dating about two years ago asked me this big questions:

"In this day and age, when there are many happy de facto couples, why have you chosen to get married?"

I can't speak for Adam but I wanted to share my life with someone and have this formally recognised. When Adam asked me to marry him (actually I asked him first - but more on that another time!) I was so excited that we'd be planning this big day and also our lives together.

My parents have been together for 37 years, married for 33 - they've done so well together when so many odds were stacked against them at the start of their relationship. They moved countries to marry.

I also love the idea of a wedding - a big party to show our love and to share it with our families and friends. Of course I know that the wedding day is not as important as marriage itself, but as someone who thought I'd never get married, I want the best party, the most beautiful dress and the funnest celebration ever. This wedding planning thing is so exciting, though we are mindful it's a budget for one day, and not the rest of our lives. On the weekend we set up a high interest joint saver account so we can start saving properly. We don't want to get into a ridiculous debt for a wedding.

Life with Adam has been great - it's nearly a year now and I can't believe the change in me (and him). Who would have thought, hey?!. It's not without challenges though - I have certainly had to adjust living with someone after living alone for so long. But we've kept the same interests, share the bills and have regular date nights. I love cooking for him (not in a subservient way) and he writes me the most romantic cards. It works.

It still surprises me that there was someone out there for me - someone who is so loving, caring and kind. Someone who loves me just like I've always dreamed of. Someone that I could give my love to, too.

Sure we could have stayed a defacto. But it feels so much more special to be married. I'm not religious so I am not getting married because of God's direction. I'm doing it because this feels so very right.

06 September 2014

I've been hearing a few murmurs of worry amongst the new bloggers. 'Am I doing this right?' 'I don't want to compete, I just want to write for the love of it.' 'When will I be recognised?' 'I feel like I don't fit in.' 'I just can't get the engagement that others have.' A lot of this has stemmed since Problogger, and I think that understandable because there were so many passionate bloggers talking about it all at once, and there were so many messages of how to grow your blog, how to make money and how blogging has moved from solely writing to being on all the social media platforms. (I've encouraged bloggers to write for the love of it, and not to feel pressured by what others are doing. Bloggers blog for man reasons - to make money, to share knowledge. to write and to connect. Blogging can be anything you want it to be.)

The reality of bloggers feeling anxious because they don't feel like they fit in, or a part of a community, or even feeling like they're overlooked (for competitions, brand sponsorships or even just readership) makes meet sad. Because I've felt that way too - in blogging and in other aspects of my life. I wrote this on my Facebook page and wanted to share it here.

(I know I've had a high concentration of blogging posts lately, but I'm just so inspired by Problogger. I will space them out soon.)

Being a blogger is so rewarding. There is readership, friendship, the practice of writing, and some perks. As bloggers, we put our heart and soul into our work - writing, photographing, sharing and connecting. Putting yourself out there is brave and scary and should be noted. For many it costs money to blog - website design and hosting, education courses, travel and tools. These reasons make it hard. It's bloody tough. If can be isolating, competitive, cliquey, costly, overwhelming, pressured, hurtful, tiring and downright dead-ending. And it's constantly changing. I met a ghost blogger last week, who adopts different personas for blogs. What even is this?! I thought!

Sometimes bloggers just don't feel like they're a part of a community. They give and give with little reward - both in terms of community and remuneration. One of my favourite bloggers, Little Wolff, has decided to say goodby to blogging. She feels burnt out. This post made me cry.

I discovered her blog one night last year and devoured it - reading years of archives and commenting on almost each post I read. I love her writing, her view point and her creativity. Her photos are amazing. We've become online friends and I am so thankful for the advice she's given me recently.

While many bloggers (including me) are writing for the love of it, sometimes there is frustration and anxiety about a low readership, about missed opportunities and about not fitting in. I've felt this way.

Good blogging is about the love, as The Everywhereist says. And that love goes both ways as bloggers.

I urge you as bloggers and blog readers to tell your favourite bloggers what they mean to you, and to share your favourite blogs so they have a wider reach. It's easy to drop someone a quick email to tell them. I did this a couple of weeks ago; and the blogger said I made their whole month!!

Bloggers: include new bloggers in the community - if they write to you to tell you you're awesome, take the time to write back. Give them shout outs on your blogs. Recommend them to brands. If you guest blog, even if you're not a blogger, share that post with your online networks. (I admit to being pretty disappointed when someone who wrote a post for me - whose story I was so excited to share and put a lot of effort into doing so - didn't share their guest post on their highly subscribed network.)

And brands/publications: give these smaller bloggers a go. Look at engagement and passion, not just page visits. Take note of their commitment and skill. If they do well on their blog, chances are they'll do well for you. Blogging is more than a hobby now, it's an industry, and for many, it's their main income and creative outlet.

I'm always sad to see a blogger go - many cite giving up blogging is because of lack of time. But it makes me even sadder when it's because they don't feel part of a community.

Do you agree?

I challenge you to give a shoutout to the not so well known bloggers you love in the comments below. I will share each one on my Facebook soon. And let them know they're awesome by leaving them a comment. Let's bring back the community spirit.

04 September 2014

My friends in the Ichthyosis community were sharing this video of a young woman singing. I was impressed with her sound, and the reach of her videos.

She also has Ichthyosis and she has skyrocketed to YouTube fame with her songs. And she's breathtakingly beautiful.

Meet Shawna Lynne Grady.

"When first asked why I sing, I must admit that I was a little taken back. Singing was never an option for me... it was like breathing. It was something that I just had to do. That being said, singing isn't something that I ever thought I could do on a professional level. The music industry is severely image based and let's face it... I don't fit the stereotypical image. My mindset began to change, however; when I posted a video to Facebook and decided to make it public. At the time, I had absolutely no idea how such a small act was going to change my life in such a profound way. Within a few days my cover of Sam Smith's, "Stay With Me" had over 100,000 shares and 300,000 "likes".

Even more surprising was the outpouring of love and support. I began receiving thousands of messages from people all over the world sharing their stories of struggle. It made me realize that insecurity is universal and the thing that I had viewed as a flaw my entire life, was the very thing that people were able to relate to.

While my journey is far from over, I can truly say that is has been one of the most incredibly eye opening experiences of my life. People have said that I have inspired them, but in actuality they are the one's who have inspired me."

02 September 2014

I've returned from the Gold Coast where I spent three days in blogging heaven - two days at the Problogger event and socialising before and after. My mind is so thinky. I'm jumping about with ideas - ones I can implement now, in a month, in six months and in a year. I hope to do more posts about this event in the coming weeks - bear with me. There's just so much goodness.

There are such talented, generous, focused people doing great things. It was great to be among people who just get it - understanding the importance of blogs and telling our own story, affirming it's ok to believe in your dreams, write them down and achieve them, and being ok with a real life conversation simultaneously happening during an online conversation.

There was so much talk of community and making a difference. And that's what blogging is about, yeah. Using your blog to make a difference and to make friends.

I had so much fun meeting old friends and making new ones. Here's Foxy and Tamsin (my roomie for the weekend).

And I finally saw Tash! Oh I have missed her! We hung out a lot, it was nice. (Also see my eyebrows?! Totally fake!)

Pip Lincolne introduced me to Lucy from The Design Files. Lucy and my sessions were on at the same time (and I really wanted to be at her session!). We had a quick chat and a photo and she was so wonderful.

I cried at her kind words about me - so so lovely. And she's sent a heap of her dedicated followers over to see what I'm about.

Thanks so much Lucy! You're the epitome of what Problogger is about - sharing, kindness and love.

These were just a few of the wonderful people I spent time with over those three days. To be honest though I did feel overwhelmed by the sheer amount of people. Lots of people. I can see why people need to retreat. If I didn't have a long conversation with you or didn't get to say hello, I apologise.

The room was engaged, asking questions in person and tweeting about the event. We were trending at one stage! Bloggers are doing amazing things for social good. Read Emma's post and linky here - add your social good to the linky! Emma said "If your blog is getting the better of you, use it to do social good". Eden said that "all the humans on the planet are your peers. What are you doing to help?"

We all suggested working with charities and causes like you would with brands. Find a charity that aligns with your niche and pitch yourself. I love that Nikki Parkinson from Styling You works with Dress for Success - to help disadvantaged women dress for job interviews. I love that Digella Bakes started Baked Relief - delivering baked goods to regions affected by natural disaster. I love that Smaggle is doing silly things for a bus for kids with special needs. I love that Jim Butcher from Mr and Mrs Romance had no idea how to get involved in doing social good before the session but has some inspiration now.

I shared some of the anecdotes from those who participated in the Ichthyosis Awareness Month Blog Project and testimonials from Sam and Connie from Love Your Sister. Their words about how sharing their stories in my blog made them feel empowered in awareness raising, confident in telling their stories and part of a community is the reason I blog.

The Problogger team is so very generous - three bloggers were invited on stage for Problogger to showcase their story - The Merry Maker Sisters and Jules from Zippy Zappy Life. These bloggers are the new superstars - and that was recognised when they received mentoring and pampering from the Problogger team. Jules has a huge family, is a foster mum and blogs about sensory issues. The MM Sisters have recently quit their jobs to blog full time. They are so enthusiastic and willing to learn. And SO lovely :)

The conference was well planned - I was in the green room for an hour and saw the amazing work that went into the social media. I also saw the team cuddling babies so their mums could get a massage. Us speakers had a wonderful dinner with the event team on Saturday night. And I'm still pinching myself that I was able to speak there!! Thank you to everyone who made the conference happen. Thanks especially to Darren Rowse - Problogger himself - for being so generous, so community minded and so knowledgeable.

Also thank you to you - my friends, family and readers for being so supportive and for giving me the confidence and drive to keep at it. There's a little giveaway happening on my Facebook and Instagram. Pop over to either one and tell me how you look and feel your best.

The conference spurred me on again to write down my dreams. I have many, and I will make them happen. Darren and many of speakers the other talked a lot about how when we wrote down our dreams, we are more likely to them happen. This is one of my dreams. Wish me luck!

01 September 2014

One day, during a ProBlogger Twitter Chat, I got into a debate with a blogger who placed all their worth on statistics. Small page views meant they did not feel successful. I tried to tell them that success is more than just page views, but it was hard to convince them in 140 characters.

One big ‘mistake’ I made with blogging was wanting to monetise and feeling left out when brands didn’t approach me or knocked me back when I asked them.

I was getting nowhere with sponsorship pitches. It seems no brand wants a chronic illness blogger. Even the brand who make products that save my life didn’t want to work with me. I’d hear bloggers talk about how easy it was to create a media kit and get flown around Australia to view product launches and receive beautiful jewellery in the mail. And I wasn’t getting those opportunities. I was despondent, measuring my worth on a lack of press releases. I’ve since learnt blogging success is so much more than monetizing. Comparison is the thief of joy and all that.

I was annoyed for a short time. But then I realised, I am successful without fully monetising my blog and getting millions of hits. While I wasn’t being inundated with offers to review products, I was getting offers from influential people that wanted to work with me. Editors, CEOs, teachers, charities, and causes. These offers of work – both paid and unpaid – have been more related to my blog niche and personal values that solely working with brands could ever be. Occasionally I will do a sponsored post for a brand that I value, but for the most part, I created my business plan to make money away from my blog.

Since I’ve started this blog (it’s one of many I’ve had since 2001) I’ve created a freelance writing and speaking career. I have written for The Guardian, DailyLife, Mamamia, ABC Ramp Up, News.com.au, BlogHer, The Daily Dot, Essential Baby, Kidspot, and Frankie Magazine. I’ve won numerous writing awards and been selected for The Guardian’s diverse writers workshop. I’ve spoken at conferences in Australia and the UK. I have also lectured in genetics and media at the University of Melbourne. I have recently run a number of sessions on writing and self advocacy at the Emerging Writers Festival. I’ve also competed my Masters thesis on the way blogging has helped me form a sense of identity.

Blogging success has also come from being asked my opinion on topics around disability advocacy and being invited to participate in events such as judging film festivals for organ donation and disability awareness. I reached out to Sam Johnson when he began Love Your Sister, asking him if I could blog his journey. He said yes!

One of the biggest things that has happened to me because of my blog was being asked to speak at a university conference in the UK after the university program found my blog. They tweeted a link to my blog, I thanked them, we formed a working relationship and they invited me to speak. My hospital helped fund my trip – I was their first academic patient that they sponsored to speak at an international conference!

Lastly, I receive messages from blog readers who are struggling with their appearance, or a new parent to a baby with Ichthyosis (the same skin condition as I have), telling me that my story has made a difference to them. Occassionally I receive an email from a reader telling me they felt alone until they found my blog and can now see some hope for themselves or their child, and have been encouraged to seek medical or psychological help. Through blogging I’ve come in contact with so many people from around the world, and I’ve personally met a few other people with Ichthyosis. Meeting these people on my overseas trip was my highlight. I have had so many people write to me saying they’re confident to tell their story about Ichthyosis to their families, friends or wider communities (or even online) now. Hearing about empowerment like that is better than huge numbers of page views.

I believe that statistics don’t necessarily equal success. Bloggers can look for other ways to reach success, form communities, and feel intrinsically rewarded through knowing their blog makes a difference to readers.

My Top Five Tips:

- Find your niche

- Don’t become focused on or despondent with page views

- If you want your business to be blogging, see how you can diversify to make money beyond your blog

- Value your readers and celebrate that you’re making a difference to them

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.